UCSF

Background: Adolescents and young adults (AYAs) with cancer must negotiate the transition between childhood and adulthood while dealing with a life-threatening illness. AYA involvement in decision making varies depending on the type of decision and when decisions occur during treatment, and evidence suggests that AYAs want to be involved in decision making. Objective: To explore involvement of AYAs with cancer in day-to-day decisions affected by their cancer and treatment. Methods: This qualitative study used interpretive focused ethnography within the sociologic tradition, informed by symbolic interactionism. Semi-structured interviews and informal participant observation took place at two quaternary pediatric oncology programs. Results: Thirty-one interviews were conducted with 16 AYAs ages 15 to 20 years. Major day to day decision-making categories identified included: (1) mental mindset, (2) self-care practices, (3) self-advocacy, and (4) negotiating relationships. Participants described how they came to grips with their illness early on and decided to fight their cancer. They described decisions they made to protect their health, how they advocated for themselves and decisions they made about relationships with family and friends. Conclusions: Through day-to-day decisions, participants managed the impact of cancer and its treatment on their daily lives. Research should focus on developing and implementing interventions to empower AYAs to participate in day-to-day decisions that will affect how they manage their cancer, its treatment and ultimately their outcomes. Implications for Practice: Healthcare providers can facilitate AYA's participation in day-to-day decision making through encouraging autonomy and self-efficacy by providing support and through effective communication.